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Dlhcba6's avatar
Dlhcba6
Member
10 years ago

Tamoxifen dosage? All for one and one for all!

I have been having real difficulties with tamoxifen this past winter. I have been taking it since March 2014. I am 45 years old and have 4 young children. Basically I was unable to walk some days, had calf muscle cramps all night to the point I would have to get my husband to wake up and assist, though I don't imagine he was sleeping well with my yelling. My arthritis in my fingers got worse to the point that I couldn't use my left hand at all some days, and the pain was horrendous.

I hate taking tablets but have done so diligently because I have been told I have to. Anyway, in early August my oncologist told me I could halve the dose until I saw her next which was today. I have felt half reasonable on half the dose. Let me also say my weight hovers around 60kg, so I do have a major question in one drug dosage for all? Well today I was told that it was great I felt better but I really needed to be taking the 20mg a day for it work. I am so frustrated. I am so tired of being told to do stuff but have no background as to why I need to do it. I am due to have my ovaries and tubes removed soon, and was told today I will then have t take something else that will have worse side effects. Good god, I feel like an old lady, I'm not old enough to be an old lady!

Has anyone ever had changes to their tamoxifen dosage? And how much is enough? If I stopped taking it and the cancer came back I would definitely be not too happy with myself, but I will also be incredibly pissed if I put up with the side effects, don't participate in activities with my husband and children because I cant move, and it comes back anyway. I know that's a pie in the sky question that we all want the answer to but, aghhhhhhhhhhhh

Lisa

 

 

tamoxifen

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  • Robyn_W's avatar
    Robyn_W
    Member
    10 years ago

    Lisa,at the risk of interfering with your comment,I just wanted to say that magnesium is perfectly safe to take with tamoxifen.The booklet that bcna have is very informative,but with extreme side effects,as OFTEN happens,it doesn't really offer much help.All the stuff about cotton clothing to stay cool,cool drinks etc. are not at all helpful with the worse side effects.There are several ladies on here that take tamoxifen and magnesium,and they get relief like I do.Cheers Robyn xox

  • Lisa_BCNA's avatar
    Lisa_BCNA
    Member
    10 years ago

    Hi Lisa,

    It's Lisa from the Policy Team. I am sorry to hear about the side effects you are experiencing from tamoxifen. I'd encourage you to speak to your medical oncologist about your concerns about the dose and the side effects you are experiencing. It might also be useful to get a second opinion if you feel your doctor is not listening to your concerns or answering the questions you have.

    You may also like to download our Hormone Therapy and Breast Cancer booklet. The booklet contains information about tamoxifen and the other hormone therapies, as well as practical tips that might help to reduce some of the side effects. If you are thinking about taking any complementary medicine, it is important first to talk to you doctor as some may interfere with your breast cancer treatments.

  • Robyn_W's avatar
    Robyn_W
    Member
    10 years ago

    It's  me again!!! I just wanted to say that my weight is the same as yours,and yes,20 mg is the standard dose for maximum effect.PLEASE try the magnesium,I also used to yell out in the night aaah ooh aah,all night long ??My husband used to ask what he could do to help,and there was nothing really.Cheers Robyn xox

  • Robyn_W's avatar
    Robyn_W
    Member
    10 years ago

    Hello,I take Tamoxifen also,and have been for the past 2 years.The only side effect for me was muscle cramps,at night.And terrible too.That all changed when I went onto Blackmores Mag Min.It is a magnesium supplement,and it is EXCELLENT at stopping the cramps.I could not believe how quickly and how well it worked.There are others on here that take it too, so I hope that they read your post and tell you their experiences.I take 2 tablets in the morning with my Tamoxifen,and another 2 about 4 pm.It is safe to take 6 a day if that is what it takes.My oncologist said it is fine ..Give it a try,you may be surprised.The only thing is,it HAS to be that exact one,not another brand or type of magnesium.The chemist told me it's something to do with the structure of that particular one.I hope this helps.Cheers Robyn xox

    y

  • Marlee's avatar
    Marlee
    Member
    10 years ago

    Hi Lisa,

    sounds awful, sorry I have no answers for you because I haven't got to the tamoxifen part yet but I will get there. Im 46 and hope some of the other ladies can answer your question as I would be interested in finding out too. I wonder if the other drug might not be as bad for you, I guess we all react differently to each drug?

    sending you virtual hugs and hoping you get some relief